When James Ragusa’s wife Jess was going through IVF treatment, the doctors sat him down and asked a question he had always anticipated, but never dared consider: are you willing to raise a child by yourself?
Jess has cystic fibrosis and was not expected to live beyond her 30s. She was 27 at the time.
“I was taken aback by it, obviously,” James Ragusa said. “But I’m madly in love with her. All I wanted was to have a family and if it came to raising a kid by myself, so be it.”
Jess Ragusa, husband James Ragusa and their baby, Cooper.Credit: James Brickwood
The Central Coast couple tried IVF for two years without success. Once Jess started on the groundbreaking cystic fibrosis medication Trikafta, which significantly extends life expectancy, she was pregnant with her son Cooper within three months.
Cooper is part of what has been dubbed the “Trikafta baby boom”, as women who previously were told they were infertile and would not live past 40 have begun having children.
The drug was listed on the Pharmaceutical Benefits Scheme (PBS) a year ago for those 12 years and older.
The federal government announced on Thursday the drug would be available on the PBS for children from six years old.
Trikafta works by correcting the abnormal protein causing mucus build-up in organs including the lungs and cervix.
Before Trikafta, Jess’ parents remortgaged their home to pay $6000 a week for their daughter’s treatment. It cost them more than $120,000 over six months.
“What good is having a home if you don’t have a daughter?” said Ragusa’s mother, Kellie McNamara.
Ragusa, now 28, says the drug has turned her life around, given her the ability to have children, and devote herself fully to being a mother.
“I get to be the mum … that runs around the garden, takes her kids to school and sport, or that soccer coach, all thanks to Trikafta,” she said.
“And instead of three years with my son, I’m going to get at least 30.”
Jessica Bean is a patient advocate with cystic fibrosis who gave birth to a daughter, Aurelia, in October.
She said it has been incredible to watch women who weren’t expected to live far beyond childhood become parents themselves.
“These therapies don’t only make having babies possible – they make being active, involved mothers possible,” she said.
The Facebook group “Trikafta Moms” has 1200 members sharing resources and support for women all over the world.
Data from the US Cystic Fibrosis Foundation shows pregnancies among women with cystic fibrosis have doubled in the past two years.
Elena Schneider-Futschik, a cystic fibrosis researcher at the University of Melbourne, said she expected the pattern to be repeated in Australia. Her research team is investigating whether treatments such as Trikafta are safe to continue while pregnant, which is still unknown.
“That’s a huge dilemma – patients don’t know if it’s safe to continue drug treatment during pregnancy,” she said.
“On the other hand, if these patients stopped drug treatment, their lung function decreases again, which puts them at a higher risk for preterm delivery, and also puts their baby at a higher risk.”
Schneider-Futschik said while Trikafta accumulated in the fetus over time, early results indicated the therapy was safe during pregnancy. If the results are confirmed, she said it may be possible to start treating babies with cystic fibrosis before birth.
“Because cystic fibrosis … already starts before birth, if it’s safe, we might be able to intervene much earlier on,” she said.
“That would give the CF baby a much healthier start to life.”
Schneider-Futschik said the introduction of Trikafta had caused a welcome problem for doctors who were once purely concerned with helping their patients reach adulthood.
“It’s really a new problem … like do these patients want to find jobs, and start families – all the things that other people are also doing?” she said.
“Offering these patients normal families, pregnancies, and everything that involves is really important.”
With Trikafta now on the PBS for 6- to 11-year-olds, Jess Ragusa said children can imagine a future beyond 40 in a way that was never possible for her.
“To know that, as a little girl, you can grow up and be a mum, be well, have a child and a future, it just changes your life.”
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